Turning Experience In To Action
Samira Sanusi Sickle Cell Foundation is dedicated to catering to Sickle Cell Disease patients in Nigeria. SSSCFoundation was founded in May 2014 by Samira Haruna Sanusi - a young woman born with Sickle Cell Anaemia. This disease took over most of her childhood and life. At the age of 15, she developed serious health complications due to Sickle Cell Disease which sent her on a 7-year journey to fight for her health, life and the disease that was slowly destroying her body and life. In the middle of this darkness, she found hope - in the form of a Bone Marrow Transplant which is now known to be the only cure for Sickle Cell Disease.
Samira and her sister/Co-Founder had successful Bone Marrow Transplants in Austria (2001 and 2008 respectively) and are now genotype AA and healthier than they have been all their lives.
The foundation is aiming to raise funds for organisations and clinics that provide Sickle Cell patients with care, aid and treatment. The Foundation has also organised awareness programs in several parts of the country to educate and sensitise people as well as create awareness on Sickle Cell Disease itself, how it impacts the lives of sufferers and caregivers alike, its complications, and the importance of genotype testing and compatibility before marriage and its implications on children. It also focuses on creating awareness about the cure for Sickle Cell Disease while attempting to create or find avenues where this revolutionary healthcare and treatment can be brought into our world and finding ways to make it accessible for patients in Nigeria.
The Foundation aims at:
• Our ultimate aim remains Sickle Cell control and eradication for generations to come by
means of education, sensitisation, provision of better health care quality and accessibility and effective control on carrying the sickle cell cycle. Eradication/prevention of this disease remains ‘Genotype Education’ - discouraging genotype carriers of the S gene marrying which may later result in SS gene carrying children, otherwise known as having Sickle Cell Disease.
• Looking for avenues to bridge the gap between our health care systems and that of the experts in Bone Marrow Transplant.
• Basic medications and hospital treatments for underprivileged and destitute patients and to where Primary Healthcare may be otherwise unavailable or unreachable.
• Provide affordable routine check-ups, blood count and health evaluation for patients.
• Encourage patients to become advocates in their schools and communities, creating
awareness and encouraging genotype tests.
• Fundraising to cover the costs of care for patients struggling to meet up with financial
Sickle Cell Disease is a health problem that affects the whole world. Unfortunately, Nigeria has the largest number of people living with the disease. There is an estimated number of 150,000 children born with Sickle Cell Disease every year.
Because this disease is of the red blood cells, it creates a lot of health complications for patients like acute chest syndrome, bone diseases, kidney failure, stroke and even death. About 40 million Nigerians also carry the S gene, which is why there is a desperate need for awareness about the disease and how to prevent it, to protect our unborn future generation.
Our hope is to reach as many Sickle Cell Patients as we can, and to provide them with the basic and daily medications they need but can't afford by assisting existing and established Sickle Cell organisations and clinics with medications and other supplies to help patients in need. We also hope to carry out fundraising exercises and appeals on behalf of patients, run media campaigns as the most effective means of information sharing and creating a network of support for both patients and their caregivers.